In April 2021, FLSE  published a blog about concerns in how the healthcare system responds to people experiencing multiple and complex needs (MCN). These concerns were logged between January and March 2021, and then reviewed by our client-facing specialist workers together with the Systems’ Change team as part of the OOPS (‘Overcome Obstacles, Provide Solutions’) Project.

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Following Up

This blog article captures our learning on this topic between April-June 2021 and acts as a follow up to our first reflection in March. this feels timely for our specialist workers because our front line support services come to a close at the end of June and even though our workers have championed the needs of our clients, there’s still improvements that can be made to the system to ensure people with MCN receive appropriate access to and support in healthcare services.

Similar to previous OOPS project learning, the last three months have shown that people experiencing MCN fall through the gaps and during the ongoing challenge of the Covid-19 pandemic, are missing out on valuable support services.

Concerns raised

Between April and June 2021, the following five concerns were raised by our specialist workers:

• Dentist registration– a client who wasn’t yet registered with a dentist in East Sussex wasn’t able to be taken on as an NHS patient to get emergency treatment in local dentist surgeries, so needed to access A&E instead

• Lack of mental health support– one client was really struggling with their mental health and took an overdose on prescription medication. The client wanted to discharge themselves but was kept in the hospital under the Mental Health Act. A mental health assessment took place, but it was decided that the client wasn’t fitting the criteria to be sectioned. Unfortunately, this meant that the case was closed without a referral for further mental health support in the community. So, the client left hospital and continues to struggle with their mental health. 

• Prescriptions– during the last 3 months, one of our clients was released from prison but sadly, their prescribed medication was not prepared or organised prior to their prison release. Suffering from seizures due to anxiety, and being relocated to a new area, the client would need to see a neurologist to get these prescriptions. This had not been arranged as part of the release planning and the client did not have access to the necessary medication on their release. Shortly after release, the client had seizures. One of the seizures caused a fall, which led to a broken hand. Due to mobility impairments, the broken hand contributed to the client not being able to wash themselves. Unfortunately, another incident occurred and they broke their leg too.
  The client’s past traumatic experiences of hospitals have been overlooked by the prison medical team. The client is now in supported accommodation. Staff at their supported accommodation are trying to encourage them to go to hospital but so far unfortunately weren’t able to convince them.
  An official complaint has now been submitted to the Lewes Prison medical team.

• Access and communication with GPs- One client was asked to book a GP appointment by phone to discuss a recent diagnosis. This diagnosis was communicated to the client by letter, without warning or preparation. The client wasn’t aware that his illness has progressed to a terminal stage which came as a surprise. This has meant that the client found out their terminal diagnosis via letter, not in person. Unfortunately the surgery wasn’t able to take their call to find out more because the phone line was busy and so the client asked the Fulfilling Lives specialist worker for help. This particular GP surgery’s rules didn’t allow the worker to make an appointment. Even the client’s social worker got involved and made numerous calls to the surgery to insist on making the appointment on the client’s behalf. The Social Workers persistent calls paid off and an appointment was made. The client then attended their appointment with support of the Specialist Worker.

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Worker Reflections

FLSE has delivered client facing support for 7 years and during this time our workers have engaged with healthcare support systems and engaged with feedback and complaints systems. They have concerns about the effectiveness of these mechanisms to serve our client’s feedback and experiences. Two of our workers share their reflections below.

‘The NHS is really good at single issue solutions but when it comes to more complex/ dual diagnosis it’s a different story. Complaints processes need to be more personal, not one size fits all… because if the NHS isn’t fit for purpose for our clients, where can our clients go? They can’t afford to go private. (…) It is necessary for complaints systems to be simple, accessible and standardised. The current systems, such as PALS, doesn’t have the resources to deal with the number of complaints- especially if they are complex. Advocacy services also seem to be understaffed to help our client’s voices being heard. Resourcing is a big issue.’

‘A personalised approach is needed in which clients are supported to reflect on their experiences in their own words. The complaints’ systems are very fragmented, and our clients unfortunately seem to be bouncing around a lot.’

One of the Solutions

In our experience at FLSE, even if specialist workers understand the process of escalating concerns and are equipped to navigate the system, they often feel that the process is bureaucratic, ineffective, time consuming and slow. There is a sense of distrust that the complaints process has the welfare of patients at the heart.

Experience has shown that our Specialist Workers and clients prefer to solve problems right there and then in an informal way. Unfortunately, informal issues or complaints don’t get recorded and it is difficult to demonstrate impact or changes to the wider complaints system using these informal channels. PALS in Hastings was also identified as difficult to access during Covid-19 because there were no phone numbers and complaints needed to be made in person in the hospital office.

We have asked our Specialist Workers what difference it would make to their clients, if the official systems to challenge and escalate unsatisfactory responses and care would be easier to access.

The answers were pretty clear:

If there’s a simplified and standardised complaints system, that is fully resourced and trained to deal with a multitude of people, it would help clients with MCN to take control of their own care and support. It would empower them to demand better services and give them a voice to share their experiences with the system.

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If you would like to hear more about our work in healthcare, then please do get in contact with Michaela and Rebecca in the FL team:

Michaela Rossmann, Systems Change Officer: michaela.rossmann@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead: rebecca.rieley@sefulfillinglives.org.uk

A deeper look into concerns about the healthcare system’s response to people with multiple and complex needs

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Our learning so far

Fulfilling Lives (FL) is committed to supporting Systems Change in Healthcare services and structures for people with multiple and complex needs (MCN). We recognise that it isn’t an easy task to influence large systems like the NHS  but at the same time we would like to encourage workers from all organisations and services to feel confident in escalating concerns about the healthcare system on behalf of their clients as we see this as an opportunity to bring about positive change: it is a way to log learning, share it and look to explore resolutions That is why one of our goals is for ‘Workers who support clients with MCN will be informed and empowered to use official systems to challenge and escalate unsatisfactory responses and care.’

Over the last six years, our specialist workers have supported numerous clients in Brighton and Hove, Eastbourne and Hastings to access primary and secondary healthcare services, including psychological healthcare services.

According to our workers, it has been clear that our clients have low expectations when it comes to healthcare support. This includes how they expect to be treated by staff. Sadly, some of our clients’ experiences only reinforce these low expectations.  For example, one client was transferred from temporary accommodation into a care home setting. Within 24 hrs, the client’s GP cancelled the daily prescriptions without giving the new GP and pharmacy time to transition his care effectively and get the prescription ready. Other examples include stigmatising practice observed by the specialist workers and challenges for clients to access the care they need. Not all our clients’ experiences are negative. On a different occasion, one of our support workers encouraged a client to make an appointment at a GP practice – something they were fearful of doing. On arrival at the surgery the client was reluctant to check in with the receptionist, but with some persuasion he did. In contrast to his expectation the receptionist welcomed him and understanding his anxiety stated we could wait in the quieter areas of the waiting room and she would come and get us when he was called in. Then, the nurse and GP saw this client as a person (not just a file) and this whole experience gave the client the confidence to return for the follow up appointment and make and attend several more.

How we are responding and why bother?

We value our specialist workers and their role to not only find solutions to healthcare issues faced by our clients on a daily basis but we also appreciate their role in advocating on their behalf and raise concerns when they observe concerns. But we needed more data to check if concerns are isolated cases or whether these concerns are more frequent across the local areas and pointed to something more systematic. That is why FL has launched the internal ‘OOPS’ (overcome obstacles, provide solutions) Project in December 2020, where specialist workers can log observed concerns, get peer support through regular Sub Group meetings and identify trends of concerns and solutions to these concerns together.

The Systems Change Team was keen to understand better the concerns that our Specialist Workers have when it comes to supporting clients through healthcare issues. These concerns might not always be about writing an official complaint to a healthcare professional, but to observe daily obstacles within the system. This might range from not being able to make an appointment with a GP on a client’s behalf, to keeping track about hospital discharges happening on a Friday afternoon for those who are homeless. Usually, these frustrations aren’t recorded but we see them as small cracks within the wider healthcare system. 

The OOPS Project launched in December 2020 and between then and early March 2021 we recorded 7 key concerns in Brighton, Hastings and Eastbourne.

Concerns raised

Here are the type of concerns raised:

• Health provision in prison – Not being able to get an appointment with the mental health assessment team to review our client’s treatment.

• Access to pharmacies and dispensing during Covid 19 – Dispensing bulk prescriptions, such as methadone, during lockdown instead of individual dosages.Another client has been banned from most pharmacies and the only one our client can access is 2 hrs drive away.

• Transitions between GP surgeries – One of our clients has been transferred into a care home in a different area which meant that the GP has cancelled all prescriptions within 24 hrs of the move due to being out of area.

• Access to the perinatal mental health team – One of our clients has had a child removed after giving birth and the perinatal mental health team can’t support the client as they only work with mothers who keep their children.

• Support staff response to client engagement challenges – A client with a coexisting condition of substance use and mental ill health was referred to SPFT for mental health support. The worker tried to contact the client 3 times but wasn’t able to reach them which resulted in a frustrated email to our specialist worker. However, the client did leave a message for SPFT but the message wasn’t followed up on. 

• Hospital discharge and follow on rehab – Our team felt there has been a lack of effective joining up of services for a client being discharged from hospital due to alcohol cirrhosis and the rehab services. After the detox in hospital, the transition was not as smooth as it could have been – consuming alcohol could have fatal consequences and this was a high risk.

Raising concerns in the context of the pandemic

It’s now been a year since the pandemic hit the UK and in March of 2020 there was a push to get the homeless communities into emergency accommodation, which created its own issues and problems. Some organisations blanket prescribed a two-week supply of methadone to recipients but ceased face to face appointments, testing and offered limited phone contact.

With most services suspending all face to face interactions with people and an emphasis placed on the wider use of digital devices and phone contact, those with MCN have been left to manage with minimal or no support from the statutory and many non-statutory health services. This has meant that clients and services often relied on FL specialist workers who continued face to face support to escalate concerns and advocate on our clients’ behalf. The pandemic has shown the health inequalities in our society and people experiencing MCN fall through the net. Raising concerns, when resources are thin on the ground, involves having emotional energy and lots of patience as well as time to get them resolved. With FL client-facing work ending in June 2021, FL specialist workers continue to focus on the best outcome for their clients, which in some cases means circumnavigating the system because complaints’ systems are felt to be slow and difficult to navigate.

One of our Specialist workers said: “The NHS closed everything from GP surgeries to wards, with their focus on Covid-19.  Initially it was impossible to contact any NHS services and as time went on this did not get any easier, again there was a desire to make everything online.  I found accessing my GP, virtually, easy but then I have access to a computer and the internet, as do many other people but many of our clients do not have smartphones or access to the internet, many are not computer literate and some find having a conversation by phone to be very distressing.  I supported a client to make an appointment to see his GP, yet despite me speaking with the surgery about the difficulties he experiences when talking on the phone, the surgery arranged a phone consultation, which resulted in my client feeling he had wasted everyone’s time and he did not discuss what he wanted to with the doctor. The media also created fear and a sense that the NHS was not to be disturbed, so many clients and members of the public in general ignored health issues.”

Useful resources when making a complaint

Obviously, sometimes an official complaint needs to be made and there are different guidelines on how to make a successful complaint. We’ve listed ways to do this below to help client-facing workers have a useful summary of the existing support and guidance to do this.

Local hospitals have a Patient Advice and Liaison Service (PALS). This service can give you information about the hospital’s complaints procedure.
It is important that you complain directly to the person or service (such as your GP or dentist). 

A challenge is often finding out what a services complaints procedure is, obviously there is a generic NHS complaints policy.

As a worker or individual, you can also complain to your local Clinical Commissioning Group (CCG), who funds the local healthcare services. This would be after all other options have been exhausted.

The Advocacy People (formerly SEAP) is the commissioned health complaints and advocacy service for East Sussex.  During the Covid-19 restrictions making referrals has become more difficult and at times communication with the service has been limited.

If the above has failed, then there’s also the option to contact your local MP.

Your local Citizen Advice Bureau or Healthwatch can support you and guide you when making a complaint.

The Ombudsman can also help if a complaint is first logged with the provider directly but the outcome hasn’t been satisfactory. They can make independent and impartial decisions on complaints and they have created a useful leaflet with the top 10 tips on making a complaint to the NHS England.
Tips on making a complaint to the NHS in England | Parliamentary and Health Service Ombudsman (PHSO)

What next?

We plan to continue with the OOPS project for a further 3 months and use this learning to further inform our understanding of the gaps and barriers in the healthcare system facing people with MCN. However, we hope to pair this learning with conversations with partners to explore how we can shed greater light on key concerns and start conversations about how we can collaborate to resolve them.

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If you would like to hear more about our work in healthcare, then please do get in contact with Michaela and Rebecca in the FL team:

Michaela Rossmann, Systems Change Officer: michaela.rossmann@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead: rebecca.rieley@sefulfillinglives.org.uk